12 Months Off Steroids:How to Cope

During the last year, there are various methods that I have tried to relieve the discomfort associated with TSW. I would like to mention a few that have worked for me, although please bear in mind that everyone has different types of skin and just because something worked for me, it does not mean that it will be effective for everyone.

For me, the main aim of any product is to make myself as comfortable as possible. TSW is distressing because of the discomfort it causes, so anything that helps a person relax is of great benefit.

So. Imagine you are a person considering quitting steroid creams. Maybe you are. How can you prepare for the rebound of steroid withdrawal?

Well, first of all I would recommend reading up as much as possible on the subject. Become an expert. Visit the Itsan site and listen to the teleconferences with Dr Rapaport. Read the articles by Dr Rapaport and Dr Fukaya, but especially take note of the amazing healing pictures shown in these articles. I also have a list of blogs and articles down the right hand side of the page. Read them. Understand them.

Visit the Itsan forum where you will meet people at various stages of withdrawal. Some have healed completely and many are close to healing. Ask questions. Get answers.

At this stage you will have a rough idea of what chaos TSW will entail. Now is the time to prepare for it. Workers need to consider how they will cope and whether it is possible to get time off work or get a sick note from a doctor. Most people are completely incapacitated for the first three months, so unless you work from home, it will be very tough. Students need to try to allow for time from their studies or arrange to study from home for a few months.

Now you need to warn friends and family. Sit them down. Talk to them. Explain what will be involved. Could someone help with childcare or chores during your illness?

Get a survival kit ready. You are going to need it. You may wish to stock up on foods that are easy to prepare and nutritious. Trust me. You won't feel like cooking. Maybe a family member could prepare meals for you.

Prepare a cosy space. For me, this was on the settee in the living room. I covered the settee in a sheet to protect the fabric and brought down my pillows and duvet to create a cosy area. A silk pillowcase is an expensive, but useful way to calm the skin. At the beginning you will have extremes of temperature, so make sure that you are easily able to cool yourself by means of a fan, or warm yourself up with a hot water bottle or microwave pad. Make sure you have plenty of sheets as you will be washing sheets and pillowcases daily to begin with. Also, with bedding, it is good to have some way of propping the legs above heart level if they start to swell.

Also consider clothing. I liked my brushed cotton pyjamas! Loose fitting T-shirts are great, and so are baggy trousers or a long cotton skirt. It may be best to cover areas that you think you will scratch! A silk scarf is great for wrapping round the neck when it is oozy, as it mops up the goo. Do not wear synthetic fabrics or anything that sweats the skin. Natural fabric is best. Also consider the fact that you will be washing these clothes daily, and they will end up with bloodstains on them. I found that placing socks on my hands at night prevented me from scratching myself.

Consider how you will entertain yourself when incapacitated. you may wish to stock up on DVD's or books. I loved the computer, but found it hard to sit at my desk for long because my legs would ooze. A tablet may be a better choice. A handheld games console/phone is also good because it keeps the hands busy so they don't scratch!

When I started TSW, I couldn't cope without a morning bath in Epsom salts. Epsom salts are soothing and antibacterial. I would wake up feeling dirty and get into my lovely bath and feel refreshed, slip on my cosy clothes and snuggle up in my cosy area. It helped and made me feel relaxed. Not everyone likes Epsom salts, or baths for that matter. many prefer a shower, or like to bath in something oily. Find out what suits you personally.

Find a good moisturiser, although this is a tough one. Everyone is different. I can tell you that Body Shop Hemp Hand Protector worked for me, but it does not suit everyone. There are some good ideas on the itsan forum Try and get samples from shops and try them out. Our skin is hypersensitive and will react to most things! One thing I have just started using is borage/starflower oil. I split a capsule and rub into the skin.

The best thing for ooze is Domeboro. It is available in the US and UK customers can get it on Amazon. A sachet of powder made up in a pint of water will keep in the fridge for a week and can be used to make cold compresses. It is astringent and dries up oozy wet skin.

An antihistamine is a good way to get to sleep at night and helps with reactive skin. I like to use an OTC cetirizine tablet, which is cheap to buy in supermarkets.

Herbal teas were useful for me. I used a tea with chamomile and valerian in it to get me into a relaxed state and calm down at bedtime. I also use a dandelion and burdock tea to counteract the adverse effects of nitric oxide on my blood vessels.

I haven't found it necessary to change my diet during TSW and have not denied myself any treats! Most people lose a lot of weight during TSW as the body is working overtime to heal. Expect to get VERY hungry. I actually put on weight (boo).

As time goes on, you will get breaks and be able to do more. At this stage I would recommend getting out and getting active, even if it is a short walk round the block. Fresh air does wonders for the mind.

After about 6 months, you may be able to tolerate a little sunshine. Sun is great for TSW but it is important to only expose yourself to the sun when ready. Too soon and you will go red.

Consider starting a blog. The more the merrier! Communicate with those on the Itsan forum. It helps you to stay sane. Get active posting comments on eczema sites and blogs or helping Jonathon post the press releases on websites. It is good to feel that you are doing something constructive. TSW is 50% physical torture and 50% mental torture. Those who go back to steroids usually do so because they can't cope with the mental torture.

I hope these guidelines help someone. I am now at a stage where I have a decent idea of what works for me and what to avoid.